Elizabeth has OCA and Nystagmus was diagnosed with Albinism at the age of 40. Liz is passionate about empowering persons with Albinism and also creating an accurate and positive perspective of Albinism in the media. She has four adult children and lives in South Australia with her husband. Liz is the Australian representative on the Global Albinism Alliance after joining the pilot project in 2017.
Jennifer was diagnosed with albinism as a 3-month-old. Until recently she had never met anyone else with albinism and now has found a whole new family. She is a strong advocate for equal opportunities for people with disabilities and strives to ensure that people are able to achieve their full potential in life. Jennifer lives in Darwin and is also the Northern Territory AFA representative.
Glen has OCA and Nystagmus and was diagnosed with Albinism as a baby. Glen has an interest in technology and how it can be used to make life easier for people with albinism. He is from Victoria and is one of our previous conference convenors.
Annette Van Gent
Annette has OCA and nystagmus, and was diagnosed with Albinism as a baby. Annette is committed to working towards challenging myths and stereotypes about Albinism, and promoting an accurate and positive understanding of people with Albinism. Annette enjoys meeting and supporting other people with Albinism and their families. Annette lives in Sydney.
Special Projects and Webmaster
Sandra is grandmother to three children with Albinism. She is the Victorian AFA Representative and also currently the Webmaster. She is passionate about providing opportunities for the albinism community to meet, provide support, share information and most importantly to act as role models for children with albinism.
Ted has OCA and Nystagmus and was diagnosed with Albinism as a baby. Ted enjoys meeting and assisting new parents of children with Albinism. Ted who lives in Sydney, is a previous President and has held executive positions for many years. He is the current NSW AFA representative.
Kieran has ocular albinism. He believes in giving everything a go and has ben an excellent role model for our kids, through his tertiary study, career and involvement in team and outdoor sports. He was an important member of the 2017 conference committee and has been on panels at most conferences since.
Tamara lives in South West Victoria, Aboriginal land of the Eastern Marr nations with her beautiful family including 16 year old Akira who has OCA, is legally blind, and a great ability to advocate for herself and others. Tamara has the desire to bring both the parent lens and youth voice to the work of AFA with Akira taking a keen interest (we are a package deal!). We strive to foster an inclusive and caring albinism community that embraces our diverse experience of albinism and life.
Ian was diagnosed with albinism at birth. In 2020, he retired after practising as a solicitor for 50 years. He has 2 sons, aged 49 and 46, neither of whom has albinism. Ian believes that AFA can play a significant part in encouraging, informing and providing reassurance and inspiration to, those with albinism and their families.
We are seeking people to assist in the running of the AFA, if you have skills that you feel would be valuable to the fellowship or would simply love to give it a go, we want to hear from you. Contact us now!
Phone: 1300 22 16 19
President: Elizabeth Beales Email
Secretary: Jennifer Rivett: firstname.lastname@example.org
Treasurer: Glen Bracegirdle Email
Minute Secretary: Annette Van Gent
Special Projects: Sandra George: email@example.com
Webmaster: Sandra George: firstname.lastname@example.org
General Committee: Ted Thomas, Kieran O’Brien, Tamara Fish and Ian Duffield.
Download AFA Constitution
The AFA stands for self advocacy and we are proud that 7 of our 9 committee members have albinism, one is a parent of a child with albinism and one a grandparent of 3 children with albinism.